• All IPF Clinical Trials

    Posted by Steve D. on April 13, 2023 at 3:36 pm

    Question – Does anyone know of a single location that lists and regularly updates the status of all clinical trials taking place for IPF? Using Google provides way to many false positives and dated information. This is certainly a service I would subscribe to if available (assuming it’s reasonably priced)!!  Any inputs will be appreciated!!

    El replied 11 months, 2 weeks ago 10 Members · 11 Replies
  • 11 Replies
  • Mary Frances

    Member
    April 16, 2023 at 1:15 pm

    MAUDE is something you can check in with

  • Samuel Kirton

    Member
    April 18, 2023 at 8:26 am

    Have you tried the U.S. clinical trials site? There is also a matching tool for clinical trials on the Pulmonary Fibrosis Foundation site. Most convenient though you will find a Clinical Trial page at Pulmonary Fibrosis News on the top banner of the page.

     

    Sam …

  • Gina Myhill-Jones

    Member
    April 18, 2023 at 7:41 pm

    Hi. I think your best bet is always to talk to your respirologist and let them know that you’re interested in drug trials. I’m currently participating in a trial after being turned down for another. I’m in Canada and can’t find any one registery for tests running or planned. But my respirologist hasn’t failed to find the right fit for me.

  • Donna Heiser

    Member
    April 19, 2023 at 9:01 am

    https://pubmed.ncbi.nlm.nih.gov/
    for all clinical trials for IPF

  • John Dominguez

    Member
    April 21, 2023 at 9:50 am

    Check out  https://www.clinicaltrials.gov/

    Plug in subject parameters in the Search blocks and you will see the list. Currently (4/20/2023) there are 211 Studies found for: Idiopathic Pulmonary Fibrosis | United States

     

    • Charlene Marshall

      Member
      April 23, 2023 at 10:21 am

      Thanks John! This website is indeed the most credible site to find IPF studies or clinical trials, many of the others are not vetted for credibility, however, this one is. Thanks for sharing for our members!
      Char.

      • Donna

        Member
        April 25, 2023 at 5:59 pm

        I just asked my Dr.’s office if my name could be submitted to the Clinical trial/Research Division today.
        I was told I may get a call in the next week.
        I was approached by another Hospital in the area a Clinical Trial they were doing I declined there’s. I didn’t feel I qualified for it anyway. I must have gotten 10 calls and e-mails on participation.

         

  • Rob

    Member
    May 16, 2023 at 6:25 am

    I’m being screened for a Phase 3 Fibroneer trial.   My doctor is also considering an inhaled Teprostinil trial.  Has anyone had any experience with either of these drugs?

    Stay well.
    Rob

  • sally williams

    Member
    May 16, 2023 at 3:29 pm

    I am participating in the Trepostinil trial.  I am in week 10 of 1 year.  Pretty easy, inhailing the drug or placebo 4 times a day.  Not too many side effects, occasional headache, dizziness.  This is my second trial.  I believe that we need to do whatever we can to get rid of this dread disease.  I only participate in the ones that allow me to stay on Esbriet.

    • Manzurul Khan

      Member
      July 11, 2023 at 2:30 pm

      Hi Sally,

      I am in the same clinical trial by United Therapeutics at week 28. The only side effects I feel are excessive coughing and some dizziness right after inhaling the medicne. I feel I can exercise more since I started the trial last December. The spiro numbers show little or no change. My O2 level is high at 99% with no lack of energy and little shortness of breath. That could be a cardiac issue. I am getting a nuclear stress test done next week.

  • Ron L

    Member
    July 7, 2023 at 2:18 pm

    I will be starting a Trial with BI 1015550 out of Wash U in St Louis. It’s 12 weeks long and hoping to see good results . I tried taking  Ofev but , the side effects were just too much (Diarrhea) .  Even with Ofevs effectiveness, per the article. I was buying OTC meds to treat the side effects. Not much help for me . Congestion is another issue I have per the IPF.

    • El

      Member
      August 5, 2023 at 1:00 pm

      Steve I totally agree with you & also would support with a reasonable fee for new trials

    • El

      Member
      August 5, 2023 at 1:02 pm

      Hi Ron
      How is your trial with B1 1015550 coming. We are rooting for you

  • El

    Member
    August 5, 2023 at 12:40 pm

    Steve I totally agree with you & also would support with a reasonable fee.

  • Lennie Naidoo

    Member
    August 18, 2023 at 10:24 am

    hi all

    is there anyone on the trial drug Saracatinib

    Lennie

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